New to the Group - Our Crohn's Story... and LDN Related Questions

January 25, 2011

My (27 yr. old) daughter was diagnosed last year with Crohn's through a colonoscopy. For about 3 years prior to that, after going to several different doctors, we had not been able to pinpoint the problem. According to the current doctor, the affected area is the terminal Ileum. The diagnosing doctor was amazed at the amount of inflammation and thought that a blockage was eminent. Lucklily, we have avoided that.... so far. They started her on 6MP (50 mg. - 1 daily) and Asacol (400 mg. 2 /day) and that has worked well for her for the past 9 months or so. Recently, about 10 days ago, she suffered a flare-up and it still has not subsided. She is vomiting several times a day and has pain in her stomach area.... as well as cramping and boating down low where the inflammation was found. Not sure what the stomach pain is all about, but this flare-up has lasted longer than any of her previous ones. She is afraid to eat anything because she is having a hard time keeping anything down. Basically, she feels rotten right now.

We had an appointment today with her GI (actually the Physician's Assistant because we couldn't see the real doctor for some time out), the same one who diagnosed her in the first place. I asked if I could tag along, and was given the OK. I wanted to be prepared and wanted to be able to ask intelligent questions (as much as possible), so I reviewed all of the research on Crohn's that I had from the past and then started looking for more, new information. That's when I came across Jill 's Penn State study on the efficacy of LDN on her Crohn's patients. I was amazed. That sparked me to do more research on LDN and that led me to this group.

We all pretty much agreed today at the doctor's office today that goal number one was to get her flare-up under control. We plan to do that with a regimen of Prednisone. My daughter doesn't like the idea (she's worried about side-effects), but I managed to convinced her that we need to take this step before we do anything else. We will start that today.

The GIs are pushing her strongly towards Remicade infusion. Since she works in a hospital (she is a childlife specialist), I am very apprehensive about lowering her immune system any farther (than the 6MP already may have), since she is often around infectious diseases like TB, Hep., etc. Once I voiced my concerns, the PA seemed to want to compromise on Humira (I'm not sold).

I then asked about LDN. Heck, the PA had never even HEARD of Low Dose Naltrexone and looked at me like I was a crackpot. I asked that if I were to send a link the Penn State Study, and to a few other credible sites I had identified that dealt with LDN as a treatment option for Crohn's, if she and hopefully her boss would take the time to read it. She told me that she would. I told her that it was my opinion, that they owed such time and effort, not just to my daughter, but to ALL of their patients.

However, I already see the handwriting on the wall. There is no way in H%(( that they are going to prescribe LDN for her (I hope I am wrong about that). They would rather her (together with her insurance company) fork out $10K to $15K per infusion for the Remicade. And some people still don't believe that we have a serious problem with our health system in this country?

Well, politics and big business aside.... here are my questions, if anyone cares to offer any advice or suggestions:

* Any thoughts on staying on the 6MP and Asacol while we add the Prednisone - even though the effectiveness of the 6MP and Asacol seems to have run their respective courses? * Does anyone have any positive or negative experiences with either the 6MP or the Asacol, in combination with Prednisone? * Assuming (as I expect) the doctor refuses to give her a script for the LDN, where do we turn then? We definitely want to give LDN a try. * Would there be any reason NOT to give the LDN a try while still on the Prednisone? 6MP? Asacol? * Any thoughts on the Humira.... in conjunction, or not, with the LDN?

Thanks for indulging me and letting me tell our story. I know that everyone out there has their own bag of rocks to carry, but maybe we can all pitch in together and do as much as possible for each other to help us all get across the finish line without busting guts.

January 26, 2011

There is special Group for ldn and crohm.you will get better

answers there

Here you can read the experience of others

https://ldndatabase.dabbledb.com/page/other/YxfKeofL#

I am using the Free version of SPAMfighter.SPAMfighter has removed 1833 of my spam emails to date.Do you have a slow PC? Try free scan!

January 26, 2011

I just searched " ldn crohn's " and the only groups that came up were this one and

a small ldn group out of the UK. What is the group you're referring to?

>

> There is special Group for ldn and crohm.you will get better answers there

>

> Here you can read the experience of others

>

> https://ldndatabase.dabbledb.com/page/other/YxfKeofL#

> <https://ldndatabase.dabbledb.com/page/other/YxfKeofL>

>

> _____

>

> I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>

> .

> SPAMfighter has removed 1833 of my spam emails to date.

>

> Do you have a slow PC? <http://www.spamfighter.com/SLOW-PCfighter?cid=sigen>

> Try free scan!

>

January 26, 2011

On Wed, 26 Jan 2011 01:32:13 -0500, tcopat <tcopat@...> wrote:

> I just searched " ldn crohn's " and the only groups that came up were this

> one and a small ldn group out of the UK. What is the group you're

> referring to?

>

LDNandIBD

n

January 26, 2011

LDNandIBD/it is for all gut issues ...

On Wed, Jan 26, 2011 at 12:32 AM, tcopat <tcopat@...> wrote:

I just searched " ldn crohn's " and the only groups that came up were this one and a small ldn group out of the UK. What is the group you're referring to?

>

> There is special Group for ldn and crohm.you will get better answers there

>

> Here you can read the experience of others

>

> https://ldndatabase.dabbledb.com/page/other/YxfKeofL#

> <https://ldndatabase.dabbledb.com/page/other/YxfKeofL>

>

> _____

>

> I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>

> .

> SPAMfighter has removed 1833 of my spam emails to date.

>

> Do you have a slow PC? <http://www.spamfighter.com/SLOW-PCfighter?cid=sigen>

> Try free scan!

>

------------------------------------

January 27, 2011

I'm not a big fan of immune suppression as a treatment strategy - unless you are a transplant case. It simply doesnt treat the cause of the disease and sets you up for nasty short and long term side effects.

The best thing you can do for crohns is:

-Diet - without a sugar, grain, legume, dairy restricted diet such as SCD, Paleo or GAPS all other therapies will be challenged. Diet is the foundation.

-LDN - Low cost, non-toxic and effective. Here is the abstract for the recent double blind study that should be published shortly. http://download.abstractcentral.com/DDW2010/myddw/646.html

And there is no reason to not start LDN right away unless you are on opiates. If you can get a prescription, consider the transdermal cream. If not, you can get it yourself from www.alldaychemist.com

-That should be enough for most. But other effective adds: Rifaximin, Mutaflor, Boswellia and Curcumin.

Alan

===

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February 2, 2011

I want to thank all those who have offered support and advice regarding my

Daughter's recent Crohn's flare. This group is an awesome resource.

Update: She was so miserable and couldn't keep anything down, so we HAD to

start the Prednisone regimen on Thursday. Started out on 40 Mg. and the results

were almost immediate. She feels a TON better and is now able to keep food

down. I would have preferred to start the LDN, but the detours are daunting and

we simply had to do something. As soon as she is weened off of the Pred., by

hook or crook we are going to start the LDN.

In addition to the GI who is pushing the Remicade and Humira, I have talked to

one other GI closer to me (my Daughter does not live in the same town). I have

also talked to our family (GP). I continue to be frustrated but we have some

time now, since it will take a while to run the Pred. regimen. None of the

three doctors have said 'no' to my request for scripts, but none have indicated

that they would be willing to either. I have one other Dr. in mind to talk to

who is a friend of mine. He was diagnosed with MS about 8 years ago, so I can't

wait to talk to him. I plan to this week.

I did find a compounding pharmacy in my neighborhood and I dropped in last week

and asked the owner about LDN. He was VERY friendly and told me that he knew

about it and had experience compounding LDN. He even pulled up the name of the

doctors who had prescribed it. We went through them one by one (probably 5 in

all). Only one was local and the others were out-of-towners. The local Dr. was

a Neurologist and is prescribing LDN for an MS patient. The pharmacist is the

one who suggested that I go to my GP and see if he would help.

Even with Dr. 's Penn State studies and the FDA's certification of LDN as

an orphan drug for the treatment of pediatric Crohn's, it seems that finding a

Dr. who thinks out of the box and is willing to write an off-label script is a

pretty tall order. It's pretty hard to understand why these doctors are so

reluctant. The evidence of efficacy is overwhelming and there is no evidence of

adverse side effects... like some of the other meds that they prescribe on a

regular basis.

I'm not giving up. We're going to get there one way or another.

Thanks again for all of the advice and information. I'll post updates as things

progress.

>

> My (27 yr. old) daughter was diagnosed last year with Crohn's through a

> colonoscopy. For about 3 years prior to that, after going to several

> different doctors, we had not been able to pinpoint the problem.

> According to the current doctor, the affected area is the terminal

> Ileum. The diagnosing doctor was amazed at the amount of inflammation

> and thought that a blockage was eminent. Lucklily, we have avoided

> that.... so far. They started her on 6MP (50 mg. - 1 daily) and Asacol

> (400 mg. 2 /day) and that has worked well for her for the past 9 months

> or so. Recently, about 10 days ago, she suffered a flare-up and it still

> has not subsided. She is vomiting several times a day and has pain in

> her stomach area.... as well as cramping and boating down low where the

> inflammation was found. Not sure what the stomach pain is all about,

> but this flare-up has lasted longer than any of her previous ones. She

> is afraid to eat anything because she is having a hard time keeping

> anything down. Basically, she feels rotten right now.

>

> We had an appointment today with her GI (actually the Physician's

> Assistant because we couldn't see the real doctor for some time out),

> the same one who diagnosed her in the first place. I asked if I could

> tag along, and was given the OK. I wanted to be prepared and wanted to

> be able to ask intelligent questions (as much as possible), so I

> reviewed all of the research on Crohn's that I had from the past and

> then started looking for more, new information. That's when I came

> across Jill 's Penn State study on the efficacy of LDN on her

> Crohn's patients. I was amazed. That sparked me to do more research on

> LDN and that led me to this group.

>

> We all pretty much agreed today at the doctor's office today that goal

> number one was to get her flare-up under control. We plan to do that

> with a regimen of Prednisone. My daughter doesn't like the idea (she's

> worried about side-effects), but I managed to convinced her that we need

> to take this step before we do anything else. We will start that today.

>

> The GIs are pushing her strongly towards Remicade infusion. Since she

> works in a hospital (she is a childlife specialist), I am very

> apprehensive about lowering her immune system any farther (than the 6MP

> already may have), since she is often around infectious diseases like

> TB, Hep., etc. Once I voiced my concerns, the PA seemed to want to

> compromise on Humira (I'm not sold).

>

> I then asked about LDN. Heck, the PA had never even HEARD of Low Dose

> Naltrexone and looked at me like I was a crackpot. I asked that if I

> were to send a link the Penn State Study, and to a few other credible

> sites I had identified that dealt with LDN as a treatment option for

> Crohn's, if she and hopefully her boss would take the time to read it.

> She told me that she would. I told her that it was my opinion, that

> they owed such time and effort, not just to my daughter, but to ALL of

> their patients.

>

> However, I already see the handwriting on the wall. There is no way in

> H%(( that they are going to prescribe LDN for her (I hope I am wrong

> about that). They would rather her (together with her insurance

> company) fork out $10K to $15K per infusion for the Remicade. And some

> people still don't believe that we have a serious problem with our

> health system in this country?

>

> Well, politics and big business aside.... here are my questions, if

> anyone cares to offer any advice or suggestions:

>

> * Any thoughts on staying on the 6MP and Asacol while we add the

> Prednisone - even though the effectiveness of the 6MP and Asacol seems

> to have run their respective courses?

> * Does anyone have any positive or negative experiences with either

> the 6MP or the Asacol, in combination with Prednisone?

> * Assuming (as I expect) the doctor refuses to give her a script for

> the LDN, where do we turn then? We definitely want to give LDN a try.

> * Would there be any reason NOT to give the LDN a try while still on

> the Prednisone? 6MP? Asacol?

> * Any thoughts on the Humira.... in conjunction, or not, with the LDN?

>

> Thanks for indulging me and letting me tell our story. I know that

> everyone out there has their own bag of rocks to carry, but maybe we can

> all pitch in together and do as much as possible for each other to help

> us all get across the finish line without busting guts.

>

February 2, 2011

OK. Here's the latest news.

My daughter is still feeling fine and still on the 40 Mg. Pred. I heard from

our family GP. He liked the idea of using the LDN and he is willing to support

us by talking to the GI, but hesitates to write a script himself. He says that

he would prefer that one Dr. control what meds are being used in treatment.

Sounds reasonable to me. He further suggested that if the current GI would not

write the script, that we simply look for another GI to take over the case, who

WOULD be willing to try the LDN. Again, the voice of reason, I think.

Then, late last night, I heard from my daughter. She said that she talked to

the PA who works for her GI. Apparently the GI has caved in and the indication

is that they are willing to give the LDN a try! WOW.

However, there was an odd comment of sorts, I thought. The PA apparently told

my daughter that they could only keep her on the LDN for 12 weeks because LDN is

classified as a narcotic. HAS ANYONE HEARD ANYTHING LIKE THIS BEFORE?

Answers.com says this about the Naltrexone/Narcotic question:

" Naltrexone is a narcotic antagonist, which means that it blocks the effects of

any narcotic in your body. It has a similar chemical structure to some

narcotics, but does not have effects on your body like a narcotic does. "

Can anyone provide me with some " hard " eveidence (other than personal

expreiences with LDN) that I can use to refute the nacrotics claim made by the

PA?

Thanks again.

WRB